Over the last couple of days I have noticed a change in the house, for the last few months I have been walking around without my pressure socks on, it has just been to hot, but this morning was the final straw, they are going back on. The temperature is dropping quickly, in fact it’s been a long time since I have been aware of such a sudden and such a dramatic change. I found myself in the kitchen making my breakfast and wanting to get out of there as my feet were so cold, I had a longing for some carpet, interestingly before I even started thinking about the weather change, I had already decided that I was having porridge today, clearly I had unconsciously picked up on it. I hear and read over and over just how badly high temperatures effect people with MS, which I have to say it does, but only when it is due to the weather, the type of heat that escaping is almost impossible. Not once have I read that we also have similar problems with the cold, yet nearly every person I have spoken to who has MS, agree with me, the cold is just as bad and we feel it more intensely than we ever did in the past. The worst thing about the cold is that it hangs around in our nerves, let me make some sense of that for you.
I was in the kitchen 15 minutes ago, since when I have been sat here at my PC and I have eaten my steaming hot porridge and clearly written this, but still I can feel the intense cold on the soles of me feet, just as if I was still standing on the kitchen lino. Getting rid of that cold icy feeling isn’t as simple as causing friction to warm them up or putting on some socks, once they have that cold locked into the nerves, they stay cold until they were ready to feel anything else. It doesn’t end there, just like when someone else stands on something cold and doesn’t get off it, the cold starts to travel through them, spreading the cold and pushing away the warmth. Right now despite no longer being stood on that cold floor, that cold is still spreading and all of me is getting colder and colder, yet I am in a room that is perfectly warm, a temperature that anyone would be comfortable to sit around in. Ask anyone, would you rather be cold or warm, most will answer warm, especially the female half of the population, I am no different, I can’t stand being cold.
Nerves seem to get confused, sometime not feeling anything, at other, well holding onto what they last felt or more commonly creating sensations that have no connection to what is happening at all. Most of us have control of our muscles to some degree, but none of us have control of our nerves, they transmit what they want to and there is nothing anyone can do about it. I know that it is more than possible to stop nerves working, there are operations that can block their messages and it is done for those who have extreme pain, far worse than I have. What to me would be the greatest breakthrough in MS treatment wouldn’t be that total block, but more something that can tone down what messages they pass. Nerves are needed for us to live normally and safely, we all need those sensations, but when they transmit rubbish that makes life uncomfortable or hard to deal with, well I for one, would happily take or have what ever treatment they have to take away their extremes, bringing them back to a level that I and many others might find acceptable.
I often think that the medical world doesn’t even try to find things that help, they are transfixed with cures. As much as I would like to be cured, just like every other person on this planet, I would just as much be grateful for some thing helps to control better my symptoms than what I have now. PRMS responds badly to most of the drugs and treatments out there that are routinely given to most MS suffers, all they can do for us is keep the pain as low as possible and try and reduce the number and severity of our spasms. The drugs I am on now do a reasonable job, I know that from my mad spells of thinking I can survive without them and I just stop taking them, it’s a rather efficient test believe me, but as things are progressing they just aren’t as strong or effective as I would want them to be. I know that they will keep raising the morphine as time goes on, that the pain side of things well they will do as much as possible, but that doesn’t deal with the rest. They can’t raise the levels of my other drugs, they are already on their highest level and they are already not enough. The spasms can’t be controlled any more, there is nothing else out there, nothing can or does deal with needles and pins, the numbness, the burning, the lightening bolts and all the other sensations all created by my nerves and no sign of anything that ever will. There is no cure on the horizon, I accepted that one long ago, but I never thought that my body would be able to create all the things that it does and I never thought that there would be nothing they could about it, ever.
An hour and a half after making breakfast and my feet are still icy cold, the rest of me just cold.
Read my blog from 2 years ago today – 18/08/12 – Defining the something > http://bit.ly/S4B4DB